Hi, I have always assumed, talking with the consultant, the VGPR (90% reduction or greater in blood and urine paraprotein) to be taken from measuring the figure at diagnosis with the end figure from treatment i.e. the SCT – and that the frontline treatment and SCT sort of counted as “one” treatment – if you see what I mean. Because some people…[Read more]

It’s early days for your kidneys so try and stay positive – it took mine a while to get to 16 gfr and after 4 months (from starting) I was told to expect no further improvement but todays reading was gfr 32 – my highest! I have found, tho’ I may be an exception, that kidney function improves with any improvement in light chain reduction – I SCTd…[Read more]

Hi Michelle, your story sounds like mine diagnosed at 50 in nov 2012 following months of being unwell and told by Dr it was a non specific virus and labyrinthitis when the symptoms were actually kidney failure but no blood test done. Eventually when I had a blood test was told to go straight to hospital as my kidneys were at 5%. I was on…[Read more]

Hello Sindy, sorry you have found us but you will find this site very comforting and informative along the way. MM does have the ability to make you feel like you’re alone in a room full of people but alone – different – set apart. MM to me is much more of a mental challenge than a physical challenge – I don’t fight the cancer I am resigned to…[Read more]

Hi David, I think if you look at the statistics of SCt very few reach stringent complete response or even a complete response – altho’ we all pin our hopes on it. Also some who have achieved SCR have found it back within the year. As I have never been on a trial – where the opportunity for maintenance is there – I won’t get it. I saw Prof Roger…[Read more]

Hi David, I actually get my results on Wednesday so will let you know but, like you, there have been indications that is has not fully worked but consultant would not discuss until after 100 days test etc. I was not on trial pre SCT so don’t think maintenance is an option until relapse – did ask SCT consultant about maintenance after but he said…[Read more]

Hi – Have you had your stem cell collection yet? I found that once I’d seen the SCT consultant I was more or less booked in for stem cell collection – the hospital gives you a slot for harvesting and then your hospital works back from this date to get you ready for the harvest collection (sounds like a body snatchers movie here!)- can’t remember…[Read more]

Hi, Sorry you Have joined us and no-one has responded to you yet – I think you may be better posting your queries in either Newcomers or Treatment – to be fair I think few people look/post under this category much – particularly if treatment related as age tends to be irrelevant. Would be helpful to say what treatment plan you are on etc as…[Read more]

Just remember John there’s a big plus point when you do hit rock bottom – the only way is up, up and home!

Thanks Carol and Finn – feel a bit better now finn – Carol think you’re getting star treatment! Carol – getting my results next week only had 0.03% in bone marrow pre transplant but lambda wouldn’t move below around 60 I think – Doc won’t discuss results until next week but know light chains haven’t moved. I’m rather strange had only 1120 lambda…[Read more]

Hi carol, 3 months after transplant all my drugs stopped – tho it was only acyclovir and co-triximole (feel like a poor relation now!). Although I have not yet spoken to my consultant about flying – waiting for final results next week I was planning to fly in June (6 months post) pre-school hols price hike and just after GCSEs. I always thought…[Read more]

Hi Izzie, when you want to hook up just private message me – I met another lady recently who had gone thru SCt etc recently like me and it was really therapeutic because we talked non stop about things you can’t share with people who haven’t been through it – I don’t think anyone can even imagine it so I don’t bother talking about it to anyone – I…[Read more]

Hi Mandy, when you think the nightmare can’t get worse it goes to a whole a new level, so absolutely gutted and sorry to hear your news and predicament. I think if you ring the helpline you may be able to get in touch with someone who has gone through a double transplant – its the peer support group/sponsor I believe. The myeloma beacon site also…[Read more]

Hi John. just keeping crossing the days off your calendar and every day will not only seem like one day less to go but also a big achievement just to get through it – be proud how strong you are and that you are a fighter. Have read on the US web sites about the mix with velcade and that it is a very effective combination but not heard of…[Read more]

Hi Keith, wow what a good collection you got – hope all went well today – have you noticed the smell of sweetcorn permeating from your pores? bet your wife has! – take care, eat well and brace yourself for a little bit of a dip in the ride over the next few days but then you’ll be back on the up again – they don’t call this a rollercoaster ride…[Read more]

Thanks for sharing Helen, gives me better idea, hoping I don’t go curly as I was prone to when it went long and have not yet met anyone with cancer who hasn’t gone curly – chemo sure screws the body up (as well as the mind of course!). The blonde certainly suits you best.

Hi John, my husband only came once a week at weekends due to the travel, work and daughter. Even then after about 40 minutes it was too much for me – not enough energy to talk much etc and so I found it just as good, if not better, to keep in touch by phone each day for short spells when I felt up to it/awake. You can also Skype but I never…[Read more]

Hi John,
Good luck with it, it’s a strange time now this waiting to go in it’s almost like the excitement and trepidation of going on holiday somewhere new. I was more excited, than anxious, hoping that the SCT would do the trick and I’d be drug free – concentrate on the end goal. When I was in I had in mind I’d be in 16 days (was in 18)and each…[Read more]

Hi, the ultimate goal is to get down to 0 pre SCT, 1.9, I believe, is a very good achievement and know some go to SCT with this level but would go with the consultant on no. of cycles pre SCT – I had 8 cycles of a different treatment and levels didn’t budge much at all after 5th cycle but continued with maximum to reinforce the treatment I’d had.…[Read more]

Hi Helen,
Just wondering how long did it take to get your hair to the length on your photo please? Think MM has made me obsessive about things – stopped obsessing so much about MM (for now anyway) – but transferred this to hair! Want to wear a wig until its about your length in the picture but its probably not doable. Always had shoulder length…[Read more]